If like Marty McFly you had the power of time travel and could go back in time to tell yourself what you know now, what do you reckon you would say to your former self in those early confusing days of pre diagnosis ?.....
Hmmmm now there’s a thought.....??!!
Some of you reading this may be at the beginning of your journey with Autism. Some of you will be far more experienced at it all than me. Some of you may have family members, or be friends with someone whose life is impacted by the condition in one way or another. And there may even be people reading this that work really hard each day to teach our kids in schools and colleges.
But each and every one of the kids that has brought you here to this blog is uniquely wonderful, and so we will all have different experiences and journeys ahead of us no matter who we are. But I reckon that so much of what we go through, actually leaves us feeling the same as each other. Confused, knackered, joyful, and overwhelmed to name but a few.
So whoever you are sat reading this , and wherever you are on your journey... know that you’re not alone. Yes things will be tough sometimes, but there’s so much more good stuff about Autism than you may realise, once you can see through the label your child has just been given. So bear with me on this one as you’ll need to use your imagination a little....as I am gonna go back a few years to tell the Mrs M of 2007 a little of what the Mrs M of 2015 now knows.
So here is my ABC’s of ‘If only I knew then what I know now’......
Acceptance ... Mrs M, it will take you a long time to accept what is happening with your son. But I wish you could trust your instincts because your gut feelings are always right, and you will get better at standing up for your son as you learn to fight the system, stuff what anyone else thinks!
Bedtime... lack of sleep and years of trying everything known to man will mean that eventually Mrs M you will admit defeat and Melatonin will become your new best friend! And you will wonder why you were so reluctant to pop those pills! Yes you will! All hail Melatonin!
Compare...never compare your son to other kids. Each child with autism is unique and yes they all have similarities, but he is his own person. And also Mrs M ...please try not to compare your child to other mainstream kids!! Your son may not join in all the activities like the rest of them do... but that’s OK, his talents lie elsewhere yet to be discovered in the future!
Diagnosis... you will have to wait a ridiculously long time for a diagnosis Mrs M, and when it comes, it will hit you like a tonne of bricks. You will feel numb for a while, and a kind of relief mixed with sadness. Do not Google search Autism!! And yes you will cry and that’s OK, its normal. But then after the shock you will come to realise that “one line on a piece of paper” is the key to unlock support, and it doesn’t need to define you or your kiddo.
Emotional rollercoaster... yeah that!! You’re on one ... sorry Mrs M you just gotta get used to that! No advice for that one I’m afraid....but just know that there will be good days and bad days. (Just make the most of the good ones cos when they’re good... they’re really good!)
Goals...all the goals you start out with will change. Your priorities will change and you will learn to accept and embrace that in time. Your life can’t be mapped out now like you planned cos sometimes shit happens!
Home...home will become your child’s sanctuary, the safe place where he can let off steam, and be free to be himself. And sadly Mrs M you and your family will be judged, prodded and poked because of that, but eventually you will reach your limit and shout STOP... no more!!....And you will learn to take control and adapt your family’s life around him because that’s just the way it has to be!! For the sake of everyone, your life does have to be different from the ‘norm.’ Again you will learn to not care what others think about this...stuff em some more!
Icepops...my advice to you is INVEST !! Your son is gonna keep the supply and demand chain of ice pops in business for the foreseeable future ;-)
Judgement and jumping... people will judge you; you will eventually learn to remove people like that from your life. Don’t carry baggage you don’t need. You will learn that everyone’s story is unique and no one really knows how it feels to be in the other person’s shoes. Ohhhh and there will be jumping, lots and lots of jumping.. ..jumping on the trampoline, on the bed, on the sofa, in the car, on the tables.... do I need to go on Mrs M?
Kind... please be kinder to yourself. Things are gonna be tough at times and you’ll make mistakes, but that’s fine. Look after yourself and don’t beat yourself up about the times when it goes wrong. You’re not superhuman. Look after yourself in order to look after your little man
Lead...his future. Don’t sit in meetings letting people tell you what’s best for your son. You know him better than anyone; you will learn take control of his future and not be so afraid to become ‘that mum.’ He needs you to stand up for him in those meetings because he can’t do it for himself
Mrs M... this is a hard one... meltdowns, for him and you! Believe me you will both have them
No... your kid is not naughty he has Autism. They may appear as one and the same thing to some people but you will learn to develop a thick skin to that. It will still hurt deep down when people don’t get him, but you have to accept that some people never will, and move on
Overthinking...no matter how many times I tell you not to, it’s pointless, because you will over think everything and it will keep you awake at night. You will find keeping a diary will help to start with, but then you will outgrow that and start a blog as a way of getting all your crazy over thinking out of your head ..... honest you will..... and people will read it and everything !!
Pahhhh...excuse me I need a pyjama day today so I can Netflix binge and eat biscuits all day #pyjamadayshouldbeprescibedontheNHS
Questions... questions, questions!! Your son asks a lot of them now and I’m afraid he still will be in 2015, so suck it up Mrs M
Routine...not only will your son’s life be dictated by routine so will yours as a result. You will find yourself planning days, and weeks ahead. You will approach the 6 weeks holidays off school like a military operation; with colour coded whiteboard pens, post it notes, and a cupboard packed full of white food and ice pops ready for the battle ahead
Sensory...issues are gonna become a big part of your life. He won’t eat that, he won’t wear this, it’s too loud, that place is too busy, he likes to bounce, he hates brushing his teeth etc. You will believe you are an “expert” in the field, and you will begin to self diagnose other kids in your head when you’re out and about......... you will develop a radar like superpower that spots Autism from metres away. Like the kid in the park with his hands over his ears that’s always crying at the noise, and you wanna rush over and plonk a pair of ear defenders on the poor unsuspecting kid! (Not sure how well that would go down with his mum either really)
Time...simply not enough hours in the day Mrs M, that’s something that never changes
Unconditional ...is the love that no matter what happens you will always have for your kids
Vodka ... and cola with ice and a slice... enough said!
Words... will be used all the time to suck the lifeblood from you on particularly challenging days: Why? When? What? Who? Where?... over and over and over again
Xray...you will need lots of them because you will continue to be clumsy and fall over on many occasions, nothing changes in that department Mrs M ( I write this whilst on crutches nursing a very sore ankle.... so trust me I know nothing changes)
Y ...why......you will ask why me? You will ask this many times! But you’ll move on from it as it’s not something you can dwell on Mrs M, who knows why anything happens in this world I certainly don’t!
zzzzzzzz... sorry what was that I so bloody tired I fell asleep!
Mrs M if you were paying attention and not skimming over this you will have noticed I missed out F. That was because F is for your friends, and family. They will be what gets you through. They will lift you up on dark days, understand when things don’t go to plan and when you have to bail on them for the 3rd time in a row, they will laugh along with you on those amazing days when things are going well, and they’ll be there to pick you up when it doesn’t.
So, thats me.......Now what would you tell yourself if you could go back to the future I wonder?
Mrs M x